DH?? Are you kidding?

[TheBajan]

Hello again,

I feel like I've just been sucker-punched.... AGAIN ! After my Dx for celiac last month, I've been reading and reading. This site is an amazing wealth of information (thanks to you all). I have never even heard of DH before now but I have been living with a rash on and off for years! I have this rash now and my doctor prescribed Prednisone and some topical cream and Zantac. I took the prednisone for one day and decided that was enough of that. The cream hasn't done anything to relieve the itching and burning so I quite using it and I chose not to take the Zantac at all. Am I going crazy? Aren't there any competent medical professionals at all? Even when they found out I had Celiac is wasn't something they were actually looking for! How does one reach 50 years old and never even raise an eyebrow about the various symptoms I have lived with? It's true that I don't go to the doctor much. Most of my issues I've just never mentioned but there are some that I've brought up. Time and time again no one has been able to give me any answers so it doesn't really foster faith in the doctors to go back. I keep seeing myself more and more in these posts and I keep reeling back in shock that it's all tied to gluten!

I'm just ranting a bit. This is the only place I can rant. Let me end on a positive note. While I am riding this emotional roller-coaster and ranting about the lows, the high point is that I actually do have a Dx and thankfully (over time) it's something I can heal from. It's something I can learn to live with, understand, and even befriend. Thanks for listening. Maybe someday I will reach a point in this journey that I can be of some help to others here as you guys are being to me.

The Bajan

[squirmingitch]

There are many rashes & skin conditions that are associated with celiac disease. The dh rash has some hallmarks. Bilateral - appears on both sides of the body in the same location ie: both elbows, both sides of the neck, both hands, both thighs. It eerily echoes or ghosts itself. It's the darndest thing I've ever seen! The itch is bone deep. Think rolling naked in poison ivy, sleeping in chiggers and having ringworm on top of all that. it itches, burns & stings all at one time. It can come & go while eating gluten or while being strict gluten-free. When gluten is ingested, the antibodies get deposited under the skin. The rash is extremely sensitive to the tiniest amount of gluten. Iodine is generally like throwing gas on a fire as far as the rash is concerned. It makes it flare like an SOB. Next time you get the rash you can sort of test it by going low iodine for a week or two. Here's a low iodine diet (leave off gluten too obviously).

Open Original Shared Link

NSAID's can also make the rash flare. Tylenol seems to be the least offender if you just have to take something. Steroids can work wonders making the rash go away but the second you quit them you get a backlash of the rash that punishes you tenfold for having taken the steroids.

Dh likes to ramp up at night or starting in the late afternoon. It can keep you form sleeping or if you do get to sleep it often wakes you.

Personally, you couldn't pay me enough to risk any cc by eating out. This rash is so horrid I refuse to take the risk of getting cc'd by eating out.

 

[TheBajan]

1 hour ago, squirmingitch said:

There are many rashes & skin conditions that are associated with celiac disease. The dh rash has some hallmarks. Bilateral - appears on both sides of the body in the same location ie: both elbows, both sides of the neck, both hands, both thighs. It eerily echoes or ghosts itself. It's the darndest thing I've ever seen! The itch is bone deep. Think rolling naked in poison ivy, sleeping in chiggers and having ringworm on top of all that. it itches, burns & stings all at one time. It can come & go while eating gluten or while being strict gluten-free. When gluten is ingested, the antibodies get deposited under the skin. The rash is extremely sensitive to the tiniest amount of gluten. Iodine is generally like throwing gas on a fire as far as the rash is concerned. It makes it flare like an SOB. Next time you get the rash you can sort of test it by going low iodine for a week or two. Here's a low iodine diet (leave off gluten too obviously).

Open Original Shared Link

NSAID's can also make the rash flare. Tylenol seems to be the least offender if you just have to take something. Steroids can work wonders making the rash go away but the second you quit them you get a backlash of the rash that punishes you tenfold for having taken the steroids.

Dh likes to ramp up at night or starting in the late afternoon. It can keep you form sleeping or if you do get to sleep it often wakes you.

Personally, you couldn't pay me enough to risk any cc by eating out. This rash is so horrid I refuse to take the risk of getting cc'd by eating out.

 

yep... everything you just said. I'm almost angry about it. Nothing works for it, it's just a matter of riding it out. I hate taking pills. I don't even like the over-the-counter stuff like Tylenol. Sometimes, all I can do to get to sleep is swallow some Nyquil or cough syrup. That's when I'm really desperate, like right now. Even then, it doesn't always work but sleep is the only escape.

[squirmingitch]

Yep, you just have to ride it out. It's a b%$@# but it's what we have to do.

[Jmg]

15 hours ago, TheBajan said:

I keep seeing myself more and more in these posts and I keep reeling back in shock that it's all tied to gluten!

 

I know the feeling! I found more and more symptoms on here that I'd had and had almost trained myself to ignore from muscle twitches to a white tongue. I have to stop myself blaming every ill on the damned stuff be it the Kennedy assassination, sinking of the Titanic, or the fall of Troy

Hope the skin issues are soon resolved. 

[Franceen]

Hey, My primary symptom was bad bad horrific DH.  I didn't start getting the diarrhea until after I was gluten-free for a couple years, and got "gluten'd".  The ONLY ONLY way to heal and rid yourself of DH is to be 100% (and I mean 100%) gluten free - probably for at least a month before you get improvement - and then never never cheating!  I got relief from the itch by taking Ibuprophen/Advil in large quantities.  It didn't make the blisters itself any more pervasive - for me.  Dapsone is the drug of choice for true DH, but is a very seriously dangerous drug.  I took it for a couple months, got hemolytic anemia and peeling skin, so I stopped.  Thanks to this forum and some very persuasive posts to me, I realized that I couldn't say "oh, it's not a lot of gluten in Rice Krispies......it's just "malt flavoring".........and I HAD to go completely gluten-free.  Read every label in the supermarket, etc.  I think that if you do that you will find relief from the DH as well as the Celiac.  It's what we have to do!  And, after all, IT's JUST FOOD!  It's not chemo or radiation or insulin or any other major medical thing....it's only food!  Much luck to you. 

[TheBajan]

Franceen,

Thanks so much for the encouragement. I had no idea that Rice Krispies has gluten in it. Fortunately, I don't eat Rice Krispies but I wouldn't have guessed. I had a colonoscopy on May 2nd and received the diagnosis the next day. I didn't really understand it or truly believe it at the time. I think it was about May 17th before I really began to understand. Even then, I still thought I would be able to just 'cut back' and that would be enough. On May 21rst, the truth that I would have to really go completely gluten free really hit me for the first time. I've read about the Dapsone but haven't taken it. I truly hate taking medications and it's only a very last, desperate option when I decide to do so. Most often, I simply grin and bear it. That's exactly why it's taken so many years to be diagnosed.

Currently, my rash is doing better and so is my outlook. I am finally embracing my new reality.

[squirmingitch]

You're going to have to become a label reader. Our motto is:

EVERY LABEL, EVERY TIME

Every time because food formulations can change. Plenty of celiacs have gotten glutened because they bought & ate something that the formulation on had changed.

It's a matter of habit. You want to keep yourself in the habit. For instance, I buy Hunt's Tomato sauce & diced tomatoes all the time.They don't have any gluten ingredients in them & really, what would gluten be doing in tomatoes or tomato sauces? I don't imagine Hunt's will ever put anything like that in their tomatoes BUT I still read the label every single time. It keeps me from getting lax on label reading. It's more the multiple ingredients things you have to really watch for but I figure if I start skipping some labels then 1 day I might "forget" to read a label that really matters & then I could get glutened.

FYI, as weird as it sounds, I have seen reports on here of people getting glutened from certain brands/types of ready made spaghetti sauce. They took it for granted such would not have wheat in it & they got got.